Getting specific: participation preference in urooncological decision-making.

BACKGROUND: Shared decision-making is the gold standard for good clinical practice, and thus, psychometric instruments have been established to assess patients' generic preference for participation (e.g., the Autonomy Preference Index, API). However, patients' preferences may vary depending on the specific disease and with respect to the specific decision context. With a modified preference index (API-Uro), we assessed patients' specific participation preference in preference-sensitive decisions pertaining to urological cancer treatments and compared this with their generic participation preference. METHODS: In Study 1, we recruited (N = 469) urological outpatients (43.1% urooncological) at a large university hospital. Participation preference was assessed with generic measures (API and API case vignettes) and with the disease-specific API-Uro (urooncological case vignettes describing medical decisions of variable difficulty). A polychoric exploratory factor analysis was used to establish factorial validity and reduce items. In Study 2, we collected data from N = 204 bladder cancer patients in a multicenter study to validate the factorial structure with confirmatory factor analysis. Differences between the participation preference for different decision contexts were analyzed. RESULTS: Study 1: Scores on the specific urooncological case vignettes (API-Uro) correlated with the generic measure (r = .44) but also provided incremental information. Among the disease-specific vignettes of the API-Uro, there were two factors with good internal consistency (α ≥ .8): treatment versus diagnostic decisions. Patients desired more participation for treatment decisions (77.8%) than for diagnostic decisions (22%), χ2(1) = 245.1, p ≤ .001. Study 2: Replicated the correlation of the API-Uro with the API (r = .39) and its factorial structure (SRMR = .08; CFI = .974). Bladder cancer patients also desired more participation for treatment decisions (57.4%) than for diagnostic decisions (13.3%), χ²(1) =84, p ≤ .001. CONCLUSIONS: The desire to participate varies between treatment versus diagnostic decisions among urological patients. This underscores the importance of assessing participation preference for specific contexts. Overall, the new API-Uro has good psychometric properties and is well suited to assess patients' preferences. In routine care, measures of participation preference for specific decision contexts may provide incremental, allowing clinicians to better address their patients' individual needs.

When attitudes and beliefs get in the way of shared decision-making: A mediation analysis of participation preference.

INTRODUCTION: Certain sociodemographic characteristics (e.g., older age) have previously been identified as barriers to patients' participation preference in shared decision-making (SDM). We aim to demonstrate that this relationship is mediated by the perceived power imbalance that manifests itself in patients' negative attitudes and beliefs about their role in decision-making. METHODS: We recruited a large sample (N = 434) of outpatients with a range of urological diagnoses (42.2% urooncological). Before the medical consultation at a university hospital, patients completed the Patients' Attitudes and Beliefs Scale and the Autonomy Preference Index. We evaluated attitudes as a mediator between sociodemographic factors and participation preference in a path model. RESULTS: We replicated associations between relevant sociodemographic factors and participation preference. Importantly, attitudes and beliefs about one's own role as a patient mediated this relationship. The mediation path model explained a substantial proportion of the variance in participation preference (27.8%). Participation preferences and attitudes did not differ for oncological and nononcological patients. CONCLUSION: Patients' attitudes and beliefs about their role determine whether they are willing to participate in medical decision-making. Thus, inviting patients to participate in SDM should encompass an assessment of their attitudes and beliefs. Importantly, negative attitudes may be accessible to change. Unlike stable sociodemographic characteristics, such values are promising targets for interventions to foster more active participation in SDM. PATIENT OR PUBLIC CONTRIBUTION: This study was part of a larger project on implementing SDM in urological practice. Several stakeholders were involved in the design, planning and conduction of this study, for example, three authors are practising urologists, and three are psychologists with experience in patient care. In addition, the survey was piloted with patients, and their feedback was integrated into the questionnaire. The data presented in this study is based on patients' responses. Results may help to empower our patients.

Different patients, different preferences: A multicenter assessment of patients' personality traits and anxiety in shared decision making.

OBJECTIVE: Patient-centered care and shared decision making (SDM) are generally recognized as the gold standard for medical consultations, especially for preference-sensitive decisions. However, little is known about psychological patient characteristics that influence patient-reported preferences. We set out to explore the role of personality and anxiety for a preference-sensitive decision in bladder cancer patients (choice of urinary diversion, UD) and to determine if anxiety predicts patients' participation preferences. METHODS: We recruited a sample of bladder cancer patients (N = 180, primarily male, retired) who awaited a medical consultation on radical cystectomy and their choice of UD. We asked patients to fill in a set of self-report questionnaires before this consultation, including measures of treatment preference, personality (BFI-10), anxiety (STAI), and participation preference (API and API-Uro), as well as sociodemographic characteristics. RESULTS: Most patients (79%) indicated a clear preference for one of the treatment options (44% continent UD, 34% incontinent UD). Patients who reported more conscientiousness were more likely to prefer more complex methods (continent UD). The majority (62%) preferred to delegate decision making to healthcare professionals. A substantial number of patients reported elevated anxiety (32%), and more anxiety was predictive of higher participation preference, specifically for uro-oncological decisions (ß = 0.207, p < 0.01). CONCLUSIONS: Our findings provide insight into the role of psychological patient characteristics for SDM. Aspects of personality such as conscientiousness influence treatment preferences. Anxiety contributes to patients' motivation to be involved in pertinent decisions. Thus, personality and negative affect should be considered to improve SDM.

Decision Aids for Shared Decision-making in Uro-oncology: A Systematic Review.

CONTEXT: Decision aids (DAs) aim to support patients in the process of shared decision-making for complex treatment decisions. To improve patient-centered care in uro-oncology, it is essential to evaluate the availability and quality of existing DAs. OBJECTIVE: To assess the quality of existing DAs for patients across the most prevalent uro-oncological entities. EVIDENCE ACQUISITION: This study was conducted in accordance with the Preferred Reporting Items for Systematic Review and Meta-analyses (PRISMA) guidelines. A systematic literature search (MedLine, Cochrane Library, Web of Science Core Collection, and CCMed) was conducted to identify DAs for treatment decisions for patients with prostate, renal, or bladder cancer. All studies reporting on the development or evaluation of DAs were included. The DAs were examined based on the International Patient Decision Aid Standards (IPDAS) and the evaluation studies were compared in accordance with Standards for Universal reporting of a patient Decision Aid Evaluations (SUNDAE). EVIDENCE SYNTHESIS: The literature search identified 1995 potentially relevant publications. Thirty-two studies reporting on 25 DAs met the inclusion criteria. Twenty-two DAs address prostate cancer, two renal tumor, and one bladder cancer. In the majority of DAs (n = 20), patients can enter individual data. A few (n = 6) DAs allow for personalization using a risk-adapted presentation of treatment options. The percentage of IPDAS criteria met in DAs ranged between 50% and 100% (median 87.5%), and the studies' adherence to the SUNDAE checklist was between 62% and 96% (median 86.6%). Evaluation studies suggest that interventions are likely efficacious. However, a preliminary meta-analysis revealed no significant difference between "DA" and "usual care" for decisional conflict or decisional regret. CONCLUSIONS: This review highlights that a number of well-developed DAs exist in urology. However, there is a need for specific instruments targeting kidney and bladder cancer. Personalization of tools and adherence to international standards of DAs should be further improved. PATIENT SUMMARY: The majority of uro-oncological decision aids target prostate cancer, whereas fewer address kidney or bladder cancer. The quality of the existing instruments is high, but can be increased further to better address specific needs of individual patients.

Patients' perspective on shared decision-making in urology: a prospective study at a university hospital.

PURPOSE: This study aims to determine the degree of shared decision-making (SDM) from urological patients' perspective and to identify possible predictors. METHODS: Overall, 469 urological patients of a university outpatient clinic were recruited for this prospective study. Before a medical consultation, clinical and sociodemographic information, and patients' emotional distress were assessed by questionnaires. After the consultation, patients completed the SDM-Questionnaire-9 (SDM-Q-9). The SDM-Q-9 scores of relevant subgroups were compared. Logistic regression was used to identify patients at risk for experiencing low involvement (SDM-Q-9 total score ≤ 66) in SDM. RESULTS: Data from 372 patients were available for statistical analyses. The SDM-Q-9 mean total score was 77.8 ± 20.6. The majority of patients (n = 271, 73%) experienced a high degree of involvement (SDM-Q-9 total score > 66). The mean score per SDM-Q-9 item was in the upper range (3.9 ± 1.4 out of 5). The most poorly rated item was "My doctor wanted to know how I want to be involved in decision-making" (3.5 ± 1.6). Immigration status (OR 3.7, p = 0.049), and nonscheduled hospital registration (OR 2.1, p = 0.047) were significant predictors for less perceived involvement. Comorbidity, oncological status, and emotional distress did not significantly predict perceived participation. CONCLUSION: In a university hospital setting, most urological patients feel adequately involved in SDM. Nevertheless, urologists should routinely ask for patients' participation preference. Patients without a scheduled appointment and patients who immigrated may need more support to feel involved in SDM.

Shared Decision Making during the COVID-19 Pandemic.

OBJECTIVE: The COVID-19 pandemic pushed some of the most well-developed health care systems to their limits. In many cases, this has challenged patient-centered care. We set out to examine individuals' attitudes toward shared decision making (SDM) and to identify predictors of participation preference during the pandemic. METHODS: We conducted an online survey with a large convenience sample (N = 1061). Our main measures of interest were participants' generic and COVID-19-related participation preference as well as their acceptance and distress regarding a triage vignette. We also assessed anxiety, e-health literacy, and aspects of participants' health. We conducted group comparisons and multiple linear regression analyses on participation preference as well as triage acceptance. RESULTS: In generic decision making, most participants expressed a strong need for information and a moderate participation preference. In the hypothetical case of COVID-19 infection, most preferred physician-led decisions. Generic participation preference was the strongest predictor of COVID-19-related participation preference, followed by age, education, and anxiety. Furthermore, both higher generic and COVID-19-related participation preferences predicted lower triage acceptance. CONCLUSION: Our findings demonstrate potential health care recipients' attitudes toward SDM during a severe health care crisis and emphasize that participation preference varies according to the context.

Predicting decisional conflict: Anxiety and depression in shared decision making.

OBJECTIVES: Emotional distress can be a potential barrier to shared decision making (SDM), yet affect is typically not systematically assessed in medical consultation. We examined whether urological patients report anxiety or depression prior to a consultation and if emotional distress predicts decisional conflict thereafter. METHODS: We recruited a large sample of urological outpatients (N = 397) with a range of different diagnoses (42 % oncological). Prior to a medical consultation, patients filled in questionnaires, including the Hospital Anxiety and Depression Scale. After the consultation, patients completed the Decisional Conflict Scale. We scored the rate of anxiety and depression in our sample and conducted multiple regression analysis to examine if emotional distress before the consultation predicts decisional conflict thereafter. RESULTS: About a quarter of patients reported values at or above cut-off for clinically relevant emotional distress. Emotional distress significantly predicted a higher degree of decisional conflict. There were no differences in emotional distress between patients with and without uro-oncological diagnosis. CONCLUSIONS: Emotional distress is common in urology patients - oncological as well as non-oncological. It predicts decisional conflict after physician consultation. PRACTICE IMPLICATIONS: Emotional distress should be systematically assessed in clinical consultations. This may improve the process and outcome of SDM.

Dealing With the COVID-19 Infodemic: Distress by Information, Information Avoidance, and Compliance With Preventive Measures.

In the ongoing coronavirus disease 2019 (COVID-19) pandemic, media reports have caused anxiety and distress in many. In some individuals, feeling distressed by information may lead to avoidance of information, which has been shown to undermine compliance with preventive health behaviors in many health domains (e.g., cancer screenings). We set out to examine whether feeling distressed by information predicts higher avoidance of information about COVID-19 (avoidance hypothesis), and whether this, in turn, predicts worse compliance with measures intended to prevent the spread of COVID-19 (compliance hypothesis). Thus, we conducted an online survey with a convenience sample (N = 1,059, 79.4% female) and assessed distress by information, information avoidance, and compliance with preventive measures. Furthermore, we inquired about participants' information seeking behavior and media usage, their trust in information sources, and level of eHealth literacy, as well as generalized anxiety. We conducted multiple linear regression analyses to predict distress by information, information avoidance, and compliance with preventive measures. Overall, distress by information was associated with better compliance. However, distress was also linked with an increased tendency to avoid information (avoidance hypothesis), and this reduced compliance with preventive measures (compliance hypothesis). Thus, distress may generally induce adaptive behavior in support of crisis management, unless individuals respond to it by avoiding information. These findings provide insights into the consequences of distress by information and avoidance of information during a global health crisis. These results underscore that avoiding information is a maladaptive response to distress by information, which may ultimately interfere with effective crisis management. Consequently, we emphasize the need to develop measures to counteract information avoidance.